title: Quality of life for parents of children with influenza-like illness: development and validation of Care-ILI-QoL.
abstract: OBJECTIVE
  Influenza-like illnesses (ILI) cause paediatric morbidity and affect the quality of life (QoL) of children and their parents. We have developed a disease-specific questionnaire (Care-ILI-QoL) to measure the QoL of caregivers of children with ILI.
  
  
  METHODS
  The drafting of the Care-ILI-QoL questionnaire was based on a systematic review, a quantitative survey, qualitative interviews with parents, and meetings with paediatricians. Children aged 6-48 months recruited from childcare centres in Sydney, Australia, were followed up during the 2011 influenza season. Care-ILI-QoL and SF-12v2 Acute Form were administered to the parent of a sick child 2 weeks after the onset of ILI, and again 2 weeks after the child had recovered. Exploratory factor analysis was conducted. Internal consistency, concurrent validity, discriminant validity, homogeneity of items, and responsiveness were tested.
  
  
  RESULTS
  Out of the 125 children enrolled from 48 childcare centres, 55 children had ILI (total 75 ILI episodes). Care-ILI-QoL was reduced from 25 to 16 items covering four factors: Daily Activities, Perceived Support, Social Life, and Emotions (Cronbach's alphas 0.90, 0.92, 0.78, and 0.72, respectively). Care-ILI-QoL has satisfactory concurrent and discriminant validity, good internal consistency, and excellent responsiveness. Total QoL and factor scores correlated well with SF-12v2 scores. Total QoL scores were significantly lower in parents who perceived their child as very/extremely sick, sacrificed 10 hours or more in work or recreation in caring for the child, or whose child had two or more general practitioner visits. Total QoL and factor scores were significantly higher after the child had recovered than when the child had ILI.
  
  
  CONCLUSIONS
  Care-ILI-QoL is the first ILI-specific QoL instrument for parents and is demonstrated to be valid and reliable in a developed country setting where the child is affected by ILI. It has the potential to be applied in clinical and research settings to assist measurement of disease burden, as a needs assessment tool for resources or to inform policy changes.
authors.affiliation: National Centre for Immunisation Research and Surveillance (NCIRS), Kids Research Institute, The Children's Hospital at Westmead, Cnr Hawkesbury Road and Hainsworth Street, Locked Bag 4001, Sydney, NSW, 2145, Australia, maria.chow@health.nsw.gov.au.
authors.forename: Maria Yui Kwan
authors.initials: MY
authors.lastname: Chow
authors.forename: Angela
authors.initials: A
authors.lastname: Morrow
authors.forename: Leon
authors.initials: L
authors.lastname: Heron
authors.forename: Jiehui Kevin
authors.initials: JK
authors.lastname: Yin
authors.forename: Robert
authors.initials: R
authors.lastname: Booy
authors.forename: Julie
authors.initials: J
authors.lastname: Leask
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001315:Australia; D002675:Child, Preschool; D005163:Factor Analysis, Statistical; D005260:Female; D006801:Humans; D007223:Infant; D007251:Influenza, Human / Q000150:complications / Q000175:diagnosis / Q000517:prevention & control / Q000523:psychology*; D007398:Interpersonal Relations; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010372:Pediatrics; D011788:Quality of Life; D015203:Reproducibility of Results; D012621:Seasons; D012720:Severity of Illness Index; D012934:Social Isolation; D012944:Social Support; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires / Q000592:standards*; D055815:Young Adult